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A Community-Engaged, Mixed-Methods Approach to Prioritizing Needs in a Statewide Assessment of Community Cancer Needs
ORIGINAL RESEARCH — Volume 21 — December 26, 2024
PEER REVIEWED
This figure consists of a series of boxes, linked by arrows that indicate a sequential order. Step 1 is preparation: Outline research goals and determine participant recruitment. The inset has these words: Met with a working group from the CNA steering committee to determine study aims and recruitment strategies. Step 2 is generation: Brainstorm and generate ideas around focal question. The inset has these words: Generated list from existing needs assessment quantitative data, focus groups, and partner meetings. Step 3 is structuring: Sort and rate each brainstormed item. The inset has these words: Conducted online sorting and rating activities with 93 participants. Step 4 is representation: Run multilevel analysis to create concept maps. The inset has these words: Used sorting and rating data to create point and 6-cluster concept maps and rating comparisons. Step 5 is interpretation: Conduct group discussions to understand meaning of maps. The inset has these words: Conducted 6 focus group discussions with 162 participants. Step 6 is utilization: Use findings to inform research, policy, or programmatic goals. The inset has these words: As the final CNA step, informed the state-level cancer plan, community program development, and policy.
Figure 1.
Six steps of concept mapping and project activities. The general steps are indicated at the top of each box, and each inset describes the activity conducted during the project, a cancer needs assessment (CNA) in Kentucky.
This figure consists of 6 polygons, each representing a cluster The cluster names are “Proactive behaviors for improved health” (Cluster 1); “Education, integrative support, and outreach” (Cluster 2); “Equitable accessibility” (Cluster 3); “Perceptions, beliefs, and stigmas” (Cluster 4); “’Kentucky Uglies’: current status of cancer and risk factors” (Cluster 5); and “Disadvantages in Appalachian, Black, and Hispanic communities” (Cluster 6). Within each polygon are multiple numbered points, with each point representing an item from an 80-item list; the 80 items sorted by cluster are provided in an Appendix at the end of this article.
Figure 2.
Combined point-and-cluster maps resulting from sorting and rating data. Cluster names were developed by participants in a cancer needs assessment in Kentucky. Relative distances between items reflect perceived similarities.
Figure A shows a go-zone plot for Cluster 2 (Education, integrative support, and outreach). The plot shows 4 quadrants; each quadrant is filled with a number corresponding to an item. The upper left quadrant is labeled “Potentially easy to address but less important” and contains these numbered items: 2. Health promotion programs by local organizations (examples: HPV vaccination, nutrition, tobacco cessation); 49. Information about risk of getting cancer again in the future (if in remission); 50. Talking with relatives and doctors about family health history; 55. Partnering with community organizations to share health information (examples: schools, faith-based, employers, local leaders); 58. Use of multiple media sources for health information (examples: mail, flyers, advertisements, websites, social media). The upper right quadrant is labeled “Important and easy to address” and contains these numbered items: 28. Doctors explaining how different treatments may affect quality of life; 51. Information on ways to reduce risks of getting cancer; 52. Information on who should get cancer screening and when; 54. Information on how to use insurance benefits (examples: free preventive care, co-pays, allowed health care providers); The lower left quadrant is labeled “Less important and not as easy to address” and contains these numbered items: 40. Culturally appropriate health information; 43. Building skills to speak up and ask questions at health care visits. The lower right quadrant is labeled “Important but not as easy to address” and contains these items: 23. Advocates or navigators to guide patients through cancer treatment; 24. Financial support for cancer treatment (examples: grants, foundation assistance, financial advisor); 25. Mental health, spiritual support, and other assistance programs for cancer patients or caregivers.
Figure B shows a go-zone plot for Cluster 3 (Equitable accessibility). The plot shows 4 quadrants; each quadrant is filled with a number corresponding to an item. The upper left quadrant is labeled “Potentially easy to address but less important” and contains these items: 5. Access and availability of high-speed internet; 13. Access to at-home cancer screening (examples: Cologuard, fecal sample tests); 21. Telehealth options for health care services; 22. Access to affordable nicotine replacement products (examples: patches, gum, lozenges); and 41. Health information at low reading levels. The upper right is labeled “Important and easy to address” and contains these items: 17. Bringing cancer screening to local communities (examples: mobile units, more screening locations); 27. Access to hospice or comfort care; 30. Clear communication between health care providers and patients; 31. Communication across multiple doctors about a patient’s care; and 33. Established relationship and trust with a health care provider. The lower left is labeled “Less important and not as easy to address” and contains these items: 14. Access to genetic screening and testing; 16. Availability of community health workers; 32. Getting 2nd or 3rd opinions of treatment options; 37. Access to diverse and/or minority health care providers; and 38. Bilingual staff or interpreters. The lower right is labeled “Important but not as easy to address” and contains these items: 3. Access to places with affordable healthy foods (examples: grocery stores, farmers markets); 6. Distance to hospitals or clinics; 11. Quality or trust of local health care facilities; 15. Access to needed doctors and specialists; 18. Out-of-pocket health care costs (examples: medications, treatment procedures); 19. Expanded access to Medicaid; 20. Insurance coverage of pre-existing conditions; 26. Help for traveling to cancer treatment (examples: car, gas, place to stay, someone to drive you); and 34. General trust or confidence in health care.
Figure 3.
Go-zone plots for A) Cluster 2 (Education, integrative support, and outreach) and B) Cluster 3 (Equitable accessibility). Plots were used to demonstrate items highly rated across scales measuring responses to 2 questions: 1) How important is this item for Kentucky communities? and 2) How easy would it be to address this item in Kentucky communities? Quadrants are sized according to average item ratings. Items with above-average ratings are toward the top (ease to address) or right (importance). Items with below-average ratings are toward the bottom (ease to address) or left (importance).
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